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. 2022 Dec;15(12):1063-1072.
doi: 10.1080/17474086.2022.2144216. Epub 2022 Nov 15.

Assessment of transition readiness to predict health care utilization during transition to adult care in sickle cell disease

Kristen E Howell  1 , Andrew M Heitzer  1 , Jennifer N Longoria  1 , Brian Potter  1 , Winfred C Wang  2 , Sheila Anderson  2 , Guolian Kang  3 , Jane S Hankins  2 , Jerlym S Porter  1
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Assessment of transition readiness to predict health care utilization during transition to adult care in sickle cell disease

Kristen E Howell et al. Expert Rev Hematol. 2022 Dec.

Abstract

Background: Transition-age patients with sickle cell disease (SCD) are at risk for poor outcomes associated with incomplete transition readiness and neurocognitive deficits. Study objectives were to: 1) test if a SCD-specific measure of self-management skills was associated with transition outcomes and 2) evaluate if caregiver-reported executive functioning was associated with self-management skills and transition outcomes among youth with SCD.

Research design and methods: Youth/caregivers were selected from a longitudinal cohort study. Caregivers completed the Behavior Rating Inventory of Executive Function (BRIEF); caregivers and youth completed the Self-Management Skills Checklist (SMSC) at a median age of 16.8 ± 0.6 years. Non-parametric tests compared SMSC and transition outcomes. Regression assessed the incremental validity of SMSC in predicting transition outcomes.

Results: In total, 95 participants (54% male, 55% severe genotype) completed the SMSC assessment. Most participants (87%) transferred to adult care within six months and 87% were retained for at least 12 months. BRIEF and caregiver-reported SMSC assessments were weakly, negatively correlated (ρ = -0.25, p = 0.0392) but were not significant in predicting transition outcomes (p > 0.05).

Conclusions: The SMSC and executive function did not predict adult care engagement. Development of readiness assessments that predict care engagement and reflect self-efficacy is important for monitoring transition-aged patients with SCD.

Keywords: Executive functioning; Health Care Transition; self-management skills; sickle cell disease; transition readiness.

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Figures

Figure 1.
Figure 1.
Teen (A) and caregiver (B) Self-Management Skills Checklist (SMSC) total score by six-month transfer gap using Kruskal-Wallis Test
Figure 2.
Figure 2.
Teen (A) and caregiver (B) Self-Management Skills Checklist (SMSC) total score by 12-month adult retention using Wilcoxon Rank Sum Test
See this image and copyright information in PMC

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